Borreliosis/Lyme and ME/CFS

Introduction

Many people in the UK with ME/CFS who are now being tested privately are
finding they are infected with bacteria from the Borrelia species that
cause borreliosis or Lyme disease. It wouldn't be surprising if a very
significant percentage of those currently with a diagnosis of ME/CFS are
actually infected with Borrelia or similar bacteria. An email group poll
showed that 80% of those with a diagnosis of borreliosis or Lyme disease
had a previous diagnosis of ME/CFS.

Borreloisis and Lyme Disease

Borrelia is the name of a group of  bacteria, of which there are many
species, over 300 I believe, some of which are pathogenic.  Borreliosis
is the name of the disease caused by infection with these bacteria.
Lyme disease has a narrower definition and can only be caused by 3
strains of Borrelia so it can exclude many people with long term illness
caused by the bacteria. The terminology used to define infections caused
by Borrelia are not clearly defined.  Lyme disease and borreliosis are
often wrongly used interchangably in the literature and sometimes the
terms Lyme borreliosis and neuroborreliosis are used. Although the term
borreliosis would be far more appropriate,  it is seldom used in the UK
which is why I often refer to the term borreliosis/Lyme.

Lyme disease was first recognised in the USA in 1975, when an outbreak
occurred in  Lyme, Connecticut, USA . The Borrelia bacteria were only
discovered in 1982 which is one of the reasons why many people,
including doctors, don't know much about it.

Some people who have borreliosis/Lyme have co-infections with other
tick-borne pathogens such as babesia, erlichia or bartonella, and these
cause illness too.  Babesia are malarial-like protozoa which infect red
blood cells, while the others are bacteria.

More about Borrelia

Borrelia bacteria are very large spirochaetes with a long thin spiral
type shape and are  similar to those causing syphilis.  They can exist
in several different forms including a dormant cyst, a motile spirochete
and intracellular cell wall deficient forms. The spirochaete is  able to
change to a different form when a threat occurs (e.g. from the immune
system or antibiotics) making it very difficult to eradicate. Borrelia
can rapidly invade every type of tissue and every system in the body
causing havoc in the host. Many symptoms are caused by Borrelia as it
causes the immune system to produce cytokines (chemical messengers that
help to regulate the immune response) and it produces many biotoxins,
mainly neurotoxins, which are attracted to many areas of the body such
as the central nervous system, peripheral nerves, muscles, joints, lungs
   etc.

A main source of Borrelia infection is by a tick bite from an infected
tick.  Just one bite is all you need from an infected tick - this is
only the size of a pinhead and may go unnoticed by the victim. If you
read the literature on Lyme, it often refers to the American Deer Tick
as being the source of infection, but in the UK the main vector is the
Sheep Tick.  Its small creatures like mice and birds which are natural
reservoirs for the infections in the UK and it is they who provide the
first meal for the newly hatched baby ticks. However, any animal could
have ticks which carry Borrelia, including pets. Migrating birds can
carry all sorts of bugs and infected ticks from other countries such as
Africa..

It is not just ticks that can transmit the infection.  Any biting insect
such as mosquitos and fleas are now believed to be able to carry and
transmit Borrelia too. It is possible that Borrelia bacteria can
sometimes be transmitted from mother to baby via the placenta, in breast
milk, between sexual partners, and also by blood transfusions, though
this is not yet widely accepted and more evidence is required. Borrelia
has been isolated in human body fluids such as semen, tears and urine,
unpasteurized cow's milk and even found in African dust.

There are 3 strains of Borrelia defined as causing Lyme disease, but
there are also other strains which are pathogenic. In the USA it is
Borrelia burgdorferi sensu stricto which causes Lyme disease, while in
the UK and Europe it is B. burgdorferi ss, B. garinii or B. afzelii. B
garinii is thought to cause more neurological symptoms than B.
burgdorferi ss and B. afzelii is thought to cause more cutaneous symptoms.

Ticks in the UK are infected with Borrelia

Many UK doctors don't know that you can get infected with Borrelia from
ticks in the UK. The Natural History Museum tested many of its UK
specimen ticks (PCR testing) and found between 8 and 97% were infected
depending on the species of the tick. Some of the specimens were 100
years old.  Another study from Swansea showed 30% of ticks in woods in
South Wales were infected with Borrelia and 7% with a co-infection
erlichosis. It can only take one tiny tick bite from an infected tick
for a human to become infected a bite that goes totally unnoticed more
often than not.

Symptoms

Some people get a bull's eye rash after a tick bite,  which is a classic
symptom of Lyme disease, but not everyone does. The symptoms of
borreliosis/Lyme can be the same as ME/CFS, e.g. painful joints and
muscles, brain fog, memory problems, headaches, flu-like, neurological
symptoms, stiff neck, numbness, tingling, extreme fatigue, fibromyalgia,
sleep problems, neurally mediated hypotension, noise or light
sensitivity and many more. Like ME/CFS, there is a vast array of
symptoms, but not everyone gets all of them.  Borreliosis/Lyme can also
mimic other diseases such as multiple sclerosis, lupus and motor neurone
disease.

Some people get symptoms of borreliosis/Lyme within a few days or weeks
of a tick bite, but for some it is much longer, even years. The symptoms
can be cyclical and they are often worse in women around the time of
menstruation. As with ME/CFS some of the symptoms may vary from one day
to the next in an unpredictable fashion.  Some people get the illness
more mildly or more severely than others. If it is left untreated some
people may go on to develop long term or life-long severe debilitating
illness.   Some people can go into remission after a period of time,
only for the disease to recurr at a later stage this is because the
bacteria can change into a dormant cyst form and then change back again
into the spirochaete form when the time is right, for example when  the
person is stressed or immunosuppressed.

The literature about Lyme disease often refers to early stage disease
and late stage disease (often called late Lyme).  The early stage
symptoms may have fewer symptoms such as flu-like, malaise, headaches,
joint and muscle pain and/or fatigue and with or without a bull's eye
rash. This rash is called localized erythema migrans and may occur a few
days before the other symptoms. Its not very clear cut though and some
people may get many more symptoms early on including neurological ones.
The spirochaete has been shown to enter the central nervous system
within 12 hours of entering the blood stream.  If the illness is left
untreated it can progress and become a chronic multisystem disease
within a few weeks or months.  Some people, however,  may just develop
the symptoms of this late stage without having or recognising an early
stage.  For example, some may only have mild early stage symptoms and
just think it's a cold or a bout of flu, without  realising what it
really is. All too often the early stage, which is so much easier to
treat, goes unrecognised and untreated, as some people do not get a rash
or do not notice the tick bite.  In fact even if a tick bite is reported
to a doctor in the UK, the doctor may well not realise its importance.
Some people may go into remission after the early stage, even if it is
left untreated, and maybe just forget about it.  The illness, however,
can recur in its chronic late form weeks, months or maybe even years
later.  It's the late stage of the disease that all too often goes
undiagnosed in the UK as standard NHS tests are usually negative by this
time and it's often the symptoms of this chronic stage that can be
misdiagnosed as ME/CFS.

Its quite possible that those who are chronically infected with
borreliosis/Lyme also have collateral conditions which may give
additional symptoms.

-    Evidence has shown that the hypothalamic-pituitary link is
malfunctioning causing pituitary suppression.  Pituitary and endocrine
abnormalities could be quite common.
-     It is possible that the cellular hormone receptors may be blocked.
   For example thyroid receptors could be blocked resulting in symptoms
of subclinical hypothyroidism.  This implies that blood testing  may not
pick up the hypothyroidism as there will be more thyroid hormone in the
blood and less in the cells due to the receptor blockade.
-     Magnesium deficiency is also often present which can give rise to
several symptoms.
-     Deficiency in vitamin B12 could also be present.

Diagnosis and testing

In the early 1990s the United States Center for Disease Control (CDC)
set up a definition of Lyme/borreliosis for an epidemiological study
into this disease.

These narrow rigid criteria have been followed throughout the world ever
since.  More recently the CDC revised these guidelines, which now
clearly state that these criteria are NOT intended for diagnostic
purposes and that patients must be primarily diagnosed by clinical
symptoms.  Despite this, the new advice seems to have gone unheeded
resulting in many cases going undiagnosed, especially late/chronic ones.

The original outdated guidelines are still rigidly adhered to in the UK.
Most UK doctors, including Infectious Diseases specialists, are UNAWARE
that:-

-   the illness can be spread by factors other than ticks.   This is not
indicated in the new guidelines as it is not widely accepted yet.
-   ticks in the UK can carry and transmit Borrelia.
-   different strains of Borrelia which are defined as causing Lyme
disease can give different disease expressions.  One of the common
strains in the UK, B. garinii,  tends to cause more neurological
symptoms, while another common strain found in the UK, B. afzelii,
tends to cause more cutaneous symptoms,  when compared with B.
burgdorferi ss which tends to cause more arthritic symptoms. Although
this is mentioned briefly in the CDC guidelines, much of the literature
about Lyme disease refers to symptoms caused by B. burgdorferi ss which
is commonly found in the USA.
-   there are more strains of Borrelia that can cause illness than those
defined to cause Lyme disease.
-   the illness should be diagnosed by clinical evidence rather than by
tests alone since these are not reliable enough .
-   if a bull's eye rash occurs, treatment should start immediately
without testing, as tests may be negative in the very early stages.
-   an active infection can exist when there is a negative serology test.
-   there can still be an active infection when symptoms persist or
recur after antibiotic treatment.

Most NHS doctors do not understand the pathophysiology of
borreliosis/Lyme and seem unaware of its extremely diverse symptoms. The
illness is fairly new in the medical world and so is poorly described in
medical textbooks.

In some Eastern European countries where it is endemic, they diagnose
borreliosis/Lyme by symptoms but in the UK doctors won't normally do
that, in fact most wouldn't even know what to look for. NHS doctors in
the UK rely on highly unreliable two-tier antibody tests to diagnose
borreliosis/Lyme. First they do the Elisa test and if that is negative
the patient is deemed not to be infected end of story.  If the patient
is fortunate enough to get a positive Elisa test a Western Blot test is
then carried out this is just as unreliable as the first test and
excludes even more infected patients! Some people may be positive for
the Western Blot but not the Elisa, but they would never be tested.
Apparently the UK Western Blot tests don't test for every strain of
Borrelia, even all those pathogenic strains found in the UK let alone
those contracted overseas, but many doctors, even Infectious Diseases
specialists, don't realise this. The UK tests may pick up some cases but
would miss many many more maybe more than 90% are missed. There are
many people who have been found negative with NHS tests and positive by
other private testing.

The above indicates that there could be many misdiagnosed cases of
borreliosis/Lyme in the UK, especially chronic ones.  All too often
people with chronic active infection are fobbed off as having post-Lyme
disease or ME/CFS.

Antibody tests for borreliosis/Lyme are highly unreliable for a number
of reasons some of the main ones being:-

-    Borrelia infections cause malfunctioning of the immune system.
Co-infections only add to this.
-    The infection can go into cyst form which reduces the immune response.
-    The infection can go into intracellular cell wall deficient form
which cannot be detected by antibodies as there is no cell wall.
-    The antibodies are in immune complexes, and so cannot be detected
by the test.
-    The spirochaetes can be encapsulated  in host tissue (lymphocytic
cell walls) and thus hide from the immune system.  I've seen them
described as wolves in sheep's clothing.
-     The spirochaetes are deep in the host tissue, especially tissue
with a very poor blood supply.
-     Recent infection - before the immune response has taken hold.
-     The disease is in the late stage.  Those who are chronically
infected very often have negative antibody tests.
-     Recent treatment with various drugs including antibiotics and
anti-inflammatories.
-     Factors which cause immunosuppression.
-     Lab techniques.
-     The lab does not test for the strain.  The UK Western Blot does
not test for every pathological strain, even all those found in the UK
let alone those found abroad.

The only decent tests you can do at the moment are private. These are
costly and include:-.

- The Bowens test in the USA, http://www.bowen.org . This is an antigen
test, ie they actually look for the Borrelia rather than antibodies to
it and they also test for co-infections at no extra cost.
-   The Igenex tests in the USA, http://www.igenex.com . Igenex do a
Western Blot test that may sometimes give a false negative as it looks
for antibodies but it is far better than the UK Western Blot and may
sometimes help convince doctors that you have borreliosis/Lyme, though
not all will believe it. They also do PCR tests.
-   There is also private blood microscopy to test for Borrelia-type
bacteria done in the UK. I think there is a considerable waiting list
for this.
-  Someone in the UK is trying to set up PCR tests (looking for DNA
fragments of Borrelia) and cultures - these will be a while yet -
private again I'm afraid. It is very very difficult to culture Borrelia,
which is why it isn't detected by NHS bacterial culture tests.
-  There is also the Acarus vet's lab in the UK which can test humans
for babesia, a co-infection, as some pets are diagnosed with this.

Testing is important so you know what infections you've got, so you can
at least begin to get  doctors to believe you have a treatable disease.
However, if tests are negative the illness should not be ruled out if
you have the symptoms. The CDC state that "there is no reliable test for
Lyme disease at this time".

Information on borreliosis/Lyme

Details of tests and information on borreliosis/Lyme can be found on the
links/files on the Eurolyme and Infections groups.

http://health.groups.yahoo.com/group/Eurolyme - for patients and
professionals.
http://health.groups.yahoo.com/group/ME-CFS-FMS_infections
Other useful sources of information on borreliosis/Lyme are:-
http://www.lymenet.org  - this site is actually recommended to UK doctors
http://www.ilads.org  - for health professionals

Treatments

Details of possible treatments are all in the files of Eurolyme. "
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne
Illnesses" by Dr J Burrascano is a good starting point.  There are
various antibiotic treatments for borreliosis/Lyme, what suits one may
not suit another. The illness is much easier to treat in the early
stages, the longer a person has had the illness the harder it is to
treat. It may not be completely curable in long term chronic cases, but
there are a growing number of people much much improved after treatment
with long courses of antibiotics.  Some people are lucky and can get
their GPs to prescribe the antibiotics, but many have problems and have
to pay privately.   All too often, especially when prescribed by NHS
doctors including infectious disease specialists, the antibiotics are
given for too short a time or too low a dose to eradicate the bacteria
fully. Some people who have babesiosis as a co-infection (similar to
malaria) need an expensive antimalarial drug costing approximately £700
a month for several months and the NHS are refusing treatment on the
grounds of cost. A consultant was willing to prescribe drugs privately
to one person with Lyme disease, but not on the NHS.

At the moment there are a few of us on Samento (TAO free cats claw), an
immune modulating herb, including myself.  Apparently some of us are
doing well on Samento, and some are not, but its early days yet. Some
people need to take the herb for quite a long time before symptoms start
to improve.  More information on Samento can be found on
http://www.samento.com.ec (also has some information on
borreliosis/Lyme) or http://www.samento-faq.eu.kz .

The Marshall Protocol is fairly new, so its early days yet, but it has
potential. There is a website, http://www.marshallprotocol.com . For
this protocol benicar, known as Olmesartan or Olmetec in the UK, is
given in high doses to suppress inflammation which allows antibiotics to
work better and be given in lower doses. Some people with CFS are being
helped by this and again some are not. There was an article on
http://www.immunesupport.com  not so long ago. Some are getting benicar
on the NHS some are not, it depends on the doctor.  "Lyme Disease
(Borreliosis).  A Plague of Ignorance Regarding the Ignorance of a
Plague" by Scott Taylor which can be found in the Eurolyme files also
covers this protocol.

Discussion

Many people get bitten by ticks in the UK, therefore the studies showing
that many ticks in the UK are infected with Borrelia, together with the
possibility that Borrelia may be passed on from person to person imply
that every year in the UK there could be thousands of cases of
borreliosis/Lyme, a treatable disease with similar symptoms to ME/CFS
and for which the NHS has very inadequate testing and diagnostic techniques.

The problem in the UK is that most NHS doctors will usually only go by
highly unreliable UK NHS tests. Even if you get a positive result from a
reputable private test, most NHS doctors will just ignore this, although
a few may go by it. Even if you have a positive result from a UK test,
its quite possible you won't be prescribed antibiotics by an NHS doctor
for a sufficient length of time to completely treat it.  There are many
reasons why antibody tests may not give a positive result. They don't
rely just on antibody tests to diagnose other infections such as
syphilis and TB, so why should they for borreliosis/Lyme? They don't
mind treating those with antibiotics, why not this infection?

Borrelia bacteria are prevalent in temperate climate zones and
borreliosis/Lyme is known to be endemic in some other European countries
and also other parts of the world.  The UK has a temperate climate, so
surely it is quite possible that it is endemic here.  After all, ticks,
insects, birds and animals do not understand geographical boundaries.
Also many people go on holiday abroad, and now the pet passport has been
introduced pets go abroad  too.

Two CFS research studies done by MERGE showing vascular abnormalities
and increased neutrophil apoptosis also support the theory that those
with ME/CFS could have an ongoing infection.

Private testing in those with ME/CFS can also pick up treatable
infections, other than those caused by Borrelia and its common
co-infections, that are not picked up by standard NHS testing.  For
example infections caused by mycoplasma, rickettsia, protozoa,
onchocerca and many more.

What we need is for research to be done to show that those with ME/CFS
have an infection - NOW. People should not be having to pay for their
own treatments and tests. Once it is proven many people with ME/CFS have
an infection, hopefully all the psychobabble stuff will fall out the window.


The author has had ME for several years and has been recently diagnosed
as having borreliosis.

October 2004,
Version 1

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